Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients

Background In addition to medical care, dying patients often need many type s of assistance, including help with transportation, nursing care, homemaki ng services, and personal care. We interviewed terminally ill adults and th eir care givers in six randomly selected areas of the United States (five m etropolitan areas and one rural county) to determine how their needs for as sistance were met and the frequency with which they received such assistanc e from family members and paid and volunteer care givers. Methods The patients, whose physicians estimated them to have less than six months to live and who had clinically significant illness other than human immunodeficiency virus infection or the acquired immunodeficiency syndrome , were referred to the study by their physicians. Of the 1131 eligible pati ents, 988 (87.4 percent) consented to a detailed in-person interview conduc ted in English, as did 893 of the 915 eligible primary care givers (97.6 pe rcent). Results Of the 988 terminally ill patients, 59.4 percent: were over the age of 65 years, and 51.5 percent were women; The most frequent terminal illne ss was cancer (in 51.8 percent of the patients), followed by heart disease (18.0 percent) and chronic obstructive pulmonary disease (10.9 percent). Fo ur percent of the patients were in an institution, such as a nursing home, residential hospice, or hospital; the rest were living in a private residen ce. A need for assistance was reported by 86.8 percent of the patients; the y required help with transportation (reported by 62.0 percent), homemaking services (55.2 percent), nursing care (28.7 percent), and personal care (26 .0 percent). Of the care givers, 72.1 percent were women. Primary care give rs were family members in 96.0 percent of cases; only 4.0 percent were unre lated. Most patients relied completely on family members and friends for as sistance. A total of 15.5 percent of patients relied only on paid assistanc e for more than half of the types of care that they needed. Volunteers (tha t is, unpaid helpers who were not family members or friends) provided less than 3 percent of all care. Conclusions In our survey of terminally ill patients, family members, usual ly women, provided the majority of assistance with nonmedical care. Althoug h many people received assistance from paid care givers, very few had assis tance from volunteers; (N Engl J Med 1999;341:956-63.) (C) 1999, Massachuse tts Medical Society.